I Am Not Temple Grandin

Recently, while writing something, I was struck by the idea that there is no Rain Woman, no archetypal autistic woman in pop culture. Later, I realized that while we don’t have a fictional archetype, there is a woman who many people associate with being autistic.

If you’re a woman on the spectrum, within moments of mentioning to an acquaintance that you’re autistic or have Aspergers, you’ll often be asked, “Have you heard of Temple Grandin?”

This is a bit like asking a physicist if they’ve heard of Stephen Hawking. Probably, right?

The thing is, the average physicist has little in common with Stephen Hawking. And I have little in common with Temple Grandin.

I’ve seen Dr. Grandin’s speeches, read her writing, and heard a great deal about her accomplishments and her life story. And aside from the fact that we’re both on the spectrum and are women, we have very little in common. She has an advanced degree, is a professor and internationally recognized speaker, and has invented technology that revolutionized her field. She was diagnosed with autism as a child and had extensive therapy growing up. She is unmarried and has chosen not to have children. She’s been known to say that her work takes the place of an intimate partner relationship in her life.

Temple Grandin fits the popular culture model of “autistic equals brilliant loner” and like the Rain Man stereotype, I can’t see myself in that model. For one thing, I’m not brilliant. There’s a huge gap between smart and genius. Smart is getting a perfect grade on a math test. Genius is reinventing the way something is done. I would love to be a genius. Who wouldn’t? But I’m not and, in fact, few autistic people are.

Some of us are savants, some are Mensa-level geniuses, some are above average or average or below average and everywhere in between when it comes to IQ. Some of us are professors or teachers or public speakers. Others work in the service industry or the arts or the military or one of hundreds of other fields. Some of don’t work and some would like to, if only someone would hire them.

The same is true of relationships. I’ve lost count of the number of times I’ve seen parents lament that their autistic child will never fall in love or get married or have children. And it only just recently occurred to me why they might think that. They’re familiar with Rain Main or Temple Grandin or Sheldon Cooper (or perhaps some darker, more ominous stereotype, thanks to the media) and have concluded that autistic people aren’t like everyone else. That we all lack interest in relationships or love or sex or marriage or parenting.

As someone who interacts with a lot of autistic adults, I can conclusively say this isn’t true. Many of the autistic adults I know are married or in a long-term relationship. Many have children. There are also people who are not in or seeking a relationship. There are those who have chosen not to have children or who are undecided.

I know that some parents say their child will never get married or have children because at six or eight or ten years old they are nonspeaking or have difficulties with self-care. Without even trying hard, I can think of three people my age who once fit that description as children and they are all in partner relationships. I also know adults who were nonspeaking as children or are nonspeaking as adults and are not in a partner relationship. And I know adults who had typical speech development and are not in a relationship.

Communicating via speech is not a predictor of adult relationships. Nor is self-care or IQ or employability or education or how well someone makes eye contact. Yes, some autistic individuals need extensive supports as adults and may find their level of disability to be a barrier to having partner relationships, but that’s impossible to predict when a child is three or six or twelve.

My larger point, though, is that autistic people are as varied as typical people. There are autistic people who are asexual, aromantic, straight, gay, lesbian, bisexual, pansexual, polyamorous or queer. There are autistic people who are trans*, genderqueer, genderfluid, androgynous, agender or cisgender. There are people who don’t identify with any of those labels and there are people who identity with several or who used to identify with one and now identify with another.

There are autistic people who choose not to have children and autistic people who have huge families and everything in between. There are autistic step-parents and autistic foster parents and, of course, autistic grandparents. Our experience of gender, sexuality, relationships and parenting is complex and multidimensional.

I know that people are trying to connect when they bring up Temple Grandin or Big Bang Theory or even Rain Man. And I know parents mean well when they tell their kids that Bill Gates or Einstein or any number of other amazingly successful and brilliant people are on the spectrum. But how helpful is this, in reality?

Even if Bill Gates or Einstein is on the spectrum, they are once in a generation people. Just like I’m not Temple Grandin, the average autistic kid is not going to grow up to be Bill Gates or Einstein. What’s more, he or she doesn’t have to. Most of us are spectacularly average and that’s okay. We don’t have to have to be once in a generation geniuses to be valuable people.

But what about having goals, you ask. Isn’t it good to have role models? Of course it is. But holding up only the most brilliant and successful people as examples of “people like you” can make a kid feel bad if they don’t measure up. Autistic people are quite literal. A kid who’s told they’re just like [insert famous person here] may think that they literally have to live up to the accomplishments of that famous person. And if they don’t, they can start feeling pretty bad about themselves.

I am not Temple Grandin and the average autistic kid is not going to grow up to be Bill Gates and that’s fine.

I admire Dr. Grandin’s professional accomplishments, but it’s important to recognize that there are so many other amazing autistic people who can be role models. If you look around the autistic community and you’ll see artists and computer programmers and teachers and writers and engineers and activists and baristas and stage managers and linguists and mathematicians and speech therapists and managers and social workers and scientists and athletes and musicians and poets and sales people and business owners and vet techs and moms and dads and grandparents and students and every single one of those people could potentially be a terrific role model for a young autistic person who wants to follow in their footsteps.

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Postscript 1: A few days after I drafted this post, I was shocked and yet not at all surprised to see that Emma of Emma’s Hopebook wrote that one of the social expectations placed on her that she would like to reject is “Trying to be Temple Grandin.” If you haven’t read her post about Social Expectations, please take a moment to do so.

Postscript 2: Yesterday I came across a link on Tumblr (thank you ndsenseandsex) to the latest issue of Impact Magazine, published by organizations based at the University of Minnesota, which focuses on Sexuality and People with Intellectual, Developmental and Other Disabilities. I think it’s a good starting place for parents and others who are interested in how they can support disabled teens and adults in this area and it’s available free as a PDF or text webpages.

For non speaking its starting to become Carly…I’ve been signal boosting autistic writers for over a yr now on fb and the first thing my brother ever has to do with any of it is to send me a link to video of her. Yes I’ve heard of her, no she’s not an anomaly, *facepalm*, its progress i suppose

I’ve noticed that too. And you’re right, it’s problematic when people imply that there is only one autistic person who is nonspeaking and was aware of what people were saying about her as child and is now able to communicate. But at least people are now aware that children who don’t speak are often very aware of what’s being said about them in front of them and need assistance in finding the communication methods that work for them. So, progress in that sense and that’s huge.

Isn’t it amazing how autistic people can write breathtaking stories/blogs, but have a hard time putting the pictures in the head into words while talking? I find it easier to communicate in writting too.

Can’t edit and somehow never manage to put everything in one comment. I think that having one celebrity to represent non speaking is much more dangerous than the Temple thing…because it reinforces the idea theyre an anomaly…”yes Carly proved she was actually smart but that’s not MY kid”…not realizing theres Barb, and Emma, and Ido, and Henry, and, wretches and jabberers guys (ugh no coffee yet their names escape me), and Tito, and SO MANY OTHERS

Another really good post. It’s so important to highlight that you don’t have to be extra-ordinary to be worthwhile, and that actually, being bog-standard-average is just fine.
As an aside I managed to read ‘aromantic’ as ‘aromatic’ and it did make me wonder whether I was missing out on something – a whole new experience where you do nothing more than sniff your partner perhaps?!

“You don’t have to be extra ordinary to be worthwhile” yes…that…my boys are, to quote a good movie, “wicked smart” but just because they are May or May not correlate to being autistic. Its hard to find the balance between my kids are smart and Well they’re autistic…but if they weren’t so much it would be ok, and not all autistics are, while still trying to get people to understand that I believe all autistics (especially referring to nonspeaking) are capable of learning and communicating to the same degree of separation non autistic are

Aromatic as an identity is funny. I will admit to occasionally sniffing my husband because he smells so good . . . 🙂

It’s fine to be average or below average or above average or whatever. I wish autistic kids had more “average” role models. What if a kid wants to be a fireman or a drummer or a teacher or a garbage hauler (not kidding, I knew a kid whose life goal was “garbageman” when he was 7 or 8)? There should be an autistic adult role model that kid can look up to.

Agreed I still vote for there being an autistic adult assigned to every autistic kid. Gives the adult a sometimes hard to secure job (not in all cases i know but a lot) and the kid an ally who “gets” them. As desperately as i try…yall are all ive got…all autistic are different i know but NT (or in my case somewhat NT) have almost zero chance of understanding how, what, why or anything about how our kids think and experience.

My (probably autistic) cousin LOVED being a garbageman, he did that work for a couple of years after graduating high school, in between computer programming and website design. He said he liked the structure of it, and the fact that it was so obviously helpful: you put the garbage in the truck, voila, street looks clean again.

I don’t know if the boy who wanted to be a garbageman was on the spectrum. He was definitely neuroatypical and drove me up a wall in the martial arts classes where I taught him for a couple of years. My guess would be more likely ADHD. But he loved garbage trucks and thought it would be so cool to spend his days riding on the back of one.

Dont know if anyone watched the dollhouse series…but i sincerely wish that tach existed (minus the erasing and docile sheep modes of it)…sit in a chair…imprint my kids brains onto mine…so that there was some chance i COULD get it

thank you for this. I have been struggling with the language of a post about this for three months now – about the constant assumption that my son must be a genius. The constant idea that he is some sort of Sheldon Cooper- a quirky, misunderstood genius – is just so diminishing of who he is all around – well meaning as it may be. It diminishes the fact that he has some very real challenges that need accommodation and it diminishes the fact that he, like any other kid, does not have to change the future of mathematics to be awesome. Or a valuable human being. Or worthy of the accommodations he needs – which so often feels like the under current of what people mean when they say this.
And yet tamping down expectations of my son in this area always feels like it flies in the face of presuming competence principles and is, as I am often reminded, a problem many wish they had.
Anyway, I see I still have not wrapped my words around what I need to say about this, so I will just revert back to thank you for the above. 🙂

I wrote this one night at 3 AM when I just couldn’t get the idea stay quiet any longer. It was one of those things that came all in a rush and then I set aside for weeks because I wasn’t sure if I’d managed to untangle everything in a way that made sense. It’s a confusing topic because there are so many facile counterarguments. What it comes down to in the end, I think, is that people on the spectrum are as varied as everyone else and should be allowed the freedom to be so.

I am grandmother of 9 year old who was recently diagnosed autism spectrum. He was finally diagnosed after he was handcuffed at school when he had a melt Down and had 4 teachers try to hold him down. (The only person he allows to touch him regularly is his mom). I would be interested in blogs that are written by a boy or man written blog if you know any that you would recommend.

I am so fascinated as I try to learn and then see in my family many hints of autism including myself, my son, my daughter, my granddaughter, omg!

Even the behaviour of an NT child can’t be used as a benchmark for how they will be when they grow up! My husband tried to kiss a girl on the playground when he was a kid and got punched in the nose. Was that supposed to mean he was destined to a celibate life? There’s a lot of fear mongering about timelines and developmental milestones and how if you don’t do a certain thing at a certain time, disaster will erupt. People forget to think of how they were at certain ages and remember they didn’t get everything perfect the first time either.

This was perfect for me today! I have just been struggling with this very thought! My son was diagnosed with Aspergers last April and it drives me crazy when people say stuff like this to me. And, now, as I try to process my own self-diagnosis (and hopefully official diagnosis one day), I just keep thinking, “Maybe it’s all in my head. I’m not like Temple Grandin or Rain Man or etc, etc.”. It is nice to read posts like this and see that there are other people out there like me, who are living seemingly normal lives to the untrained eye, but who actual struggle on a daily basis and process things differently and view the world in a different light. But even thought we face these struggles and challenges, we have somehow figured out how to manage, and for that, we are strong and intelligent and talented. We are role models.

We are role models! 🙂 I struggled with those stereotypical models at first too. It’s hard to see yourself as being on the spectrum when you’re nothing like the few popular examples that come to mind. It took me a while to find other people like me and once I did, it all just clicked so strongly. Thank God for autistic bloggers.

Absolutely, thank God for autistic bloggers! It all clicks so well for me, too. My husband still isn’t so much on board with the idea but he often thinks of the popular examples, too. Or he goes off of what he sees in our son. I’m trying to get him to understand that autism is so different for females than it is for males and especially adult females. I am so thankful I stumbled upon your blog. I feel like I found a place where I belong. Finally 🙂

I agree with you. I’m nothing like Temple Grandin or Rain Man, I don’t have their achievements and their almost superpower-like abilities. It was inspirational because they could be positive examples of what it means to be autistic and I could relate to them in some way, but I also lost some confidence. What if I’m not “autistic enough”? Temple Grandin’s achievements seemed far above me! It’s also the reason I didn’t diagnose myself until recently… I just couldn’t relate to any of the popular examples out there.

Assuming anyone with a disability is non-sexual can be disastrous. My father and step-mother have two high-functioning, autistic boys close to my daughters age. My daughter used to spend the night, the three of them would sleep on the sofa bed. As my daughter approached puberty, I insisted that practice stop, in no uncertain terms. My step-mother’s response was that I don’t have to worry because her boys are autistic. Wrong on so many levels. My daughter is proof that autistic people do, in fact, have sex. I also didn’t like that she implied a female would not be the agressor.

Now to get on my soap box: We teach our children to not allow others to touch their ‘private parts’. ALL children, no matter the disability or mental age, ALL CHILDREN MUST BE TAUGHT NOT TO TOUCH (or taste) OTHER PEOPLE’S PRIVATE PARTS. Young children do not understand reciprosity. They need to be told explicitly.

Kids on the spectrum should definitely be getting the same education about sexuality and their bodies that other kids their age are getting. They may need to learn via different tools or communication methods, but age appropriate information is crucial. We go through the same hormonal changes as every other teenager.

Rain Woman, Lol. This wins. Sometimes people ask me if I can count cards, and I act mysterious and say well, watch the movie 21 to see if it’s a good idea in this day and age. Don’t ask me if the movie is realistic, because I will just be forced for undefined reasons to say I don’t know. Word to the wise. Hehe.

Thank you for such a brilliant post. we work with individuals and families with ASC and we were wondering whether it would be ok to put a link to this post on our facebook page?
Thank you, we really enjoy reading your posts 🙂

I think everyone who is late diagnosed thinks about this at some point. There’s no way to know if being diagnosed in childhood would have given us a better or worse outcome. There are benefits to having an early diagnosis, but I can also see some drawbacks in the way autistic kids are treated and what they’re sometimes subjected to by the educational and medical system.

some AS folk desperately want relationships but haven’t the foggiest notion as to how to go about establishing such with anybody. as far as relationships go, some AS folk are like a cat watching a human use a doorknob and wondering what that is all about.

What exactly does autistic look like anyway? Yall supposed to grow two heads or something? I get told that about my boys all the time…and it makes no sense…unless being autistic means youre cute as hell 😉

I got the “extreme male brain” trope at my diagnosis thanks to my gender presentation. Though the person who diagnosed me did recommend books by Liane Holliday Wiley and Rudy Simone so he was aware of other women on the spectrum, which was nice.

Ugh, facepalm indeed. When I got diagnosed and as I was beginning to address tricky autistic stuff with my psychiatrist, she kept suggesting books the read and things to research (I was requesting more information, she wasn’t pushing it on me). I kept waiting for her to say “oh hey, you should read something by Temple Grandin,” and somehow – it felt like very deliberately – she did not. She never said anything about her directly, but made very clear efforts to direct me towards researching autism as it affected *me* and not as it *should* affect people or how it stereotypically affects people.

So refreshing to work with a competent and respectful mental health professional.

(To be clear, I also admire Temple Grandin for the work she has done professionally and the power of influence she holds. My issue is not at all with her, but with our culture that is content to have precisely one example of an autistic woman.)

Yeah. I respect Temple Grandin but I didn’t really like her books personally. They actually do make very broad statements about autistic people in general that I don’t find to be true at all. She seems to say all autistics are like her. Which at that time she may have believed as there were so few writing about their experiences. I imagine that is also why so many people also assume all autistic people are like her. I personally couldn’t relate to very much she wrote about at all. A few things hit home with me (I like weighted blankets and pressure and find it comforting) but not most of it. I’m not a genius. I’m smart but not a genius. I didn’t have money or therapy or help at all growing up and I didn’t get to go to school to get an advanced degree (that goes back to the not having money thing) so overall I honestly found her books to not be enlightening or helpful to me at all….they were kind of discouraging because she accomplished a lot and it just made me feel like a failure. I don’t think I’d ever actually recommend her books to an autistic person.

Wow. I just attempted to tackle this from a slightly different angle, as pertains to people with Down syndrome. I’m so relieved to read this post as I think part of what I and others in the Ds (and Ds parent) community have been struggling with has been what sometimes has sounded like a blanket affirmation of intelligence in autism as a kind of a “redeeming” feature. I’m now realizing that this is coming also from outside. Thank you for clarifying that for me 🙂

This is definitely something that requires much more discussion. Within the communities as well to outside.

Your post is really interesting. I’d never thought of the issue in that light before. Thank you for linking to it. I’ve been slowly learning about the issues faced by the Ds community recently and it’s interesting to see where there is overlap with the autism community and where things are different.

Autistic people are all over the map when it comes to IQ and often IQ tests are unreliable measures of potential because of the way they’re structured. If someone doesn’t speak or has no reliable means of communication, a large portion of the IQ test is going to simply be zeroed out for them.

I want to add another identity group that suffers from the same tendencies: gifted kids/probably adults too. There’s all the pressure to be a real genius, all the devaluing of self that comes from a trait one was born with (IQ) being valued over all real things about oneself, and all the dismissal of one’s real problems and refusal to provide supports because “you’re smart.”

I have had people say to my face things supporting eugenics or the supremacy of gifted people, I guess on the presupposition that since I’m gifted in some ways, I’ll welcome those sentiments. In reality I’m multiply disabled and I just remember all the times I’ve been called the r-t-d word. I don’t think that giftedness can be called a disability, since many gifted people aren’t disabled, but there also seems to be a high incidence mental health problems, developmental disabilities, and social stigma. If you’re different in one way I suspect it makes you more likely to be different in others as well. My point is that the concept of high intelligence is often used against people who display high intelligence, because it at once puts unrealistic expectations on them, reduces them to a single quality, and denies the reality of any impairments they happen to have. This has been well-discussed in autistic communities, but it’s not isolated to them.

This isn’t to say that the creepy cult of high intelligence hasn’t benefited me in life. I got a lot of college scholarships and ended up with a fairly high-paying job without looking for one (which is good, since EF would’ve made the job search pretty hard and anxiety might’ve made it impossible). It’s really disorienting knowing that my food, housing, and various freedoms that you buy, like transportation, health care, and an internet connection, are only provided to me by my society because of a certain thing my brain can do that my education happened to prepare me for, and that all of those things would be much more in question if my brain couldn’t do that thing or I’d majored in English.

I’m trying to cut out the various forms of bigotry expressed in my language. Sighted/blind metaphors are hard. “Stupid” is hard. “Crazy” is hard. “Ugly” is hard. Actually, all three of those words are particularly hard because I’m used to using them at work, to describe decisions and code. I fully trust that I’ll be able to break the habits, though.

As for autism/developmental disability, which I’m at least standing very close to and if not diagnosable probably should be IMO, if we didn’t have certain biases that make one set of impairments a developmental disability and another “common traits of gifted kids”, I’m pretty embarrassed by how much internalized ableism I’ve spewed back out into the world in the past. I often didn’t want to be perceived as developmentally disabled because I knew that often meant being seen as subhuman and having all the rest of my personality and path in life missed. Now I know that saying, “Oh, but I can actually notice/understand/think X” doesn’t actually do anything at all against that ableism. The particular things I can do that make up my experience of the world don’t matter–another intellectually/developmentally disabled person has their own set of things that make up their life, and we’re both equally worthy and equally denigrated by ableism that would paint us as subhuman, tragedies, not living lives worth living, or empty shells. I’d much rather fight for all of us than try to curry favor with the eugenics-inclined people who are susceptible to the argument that my IQ makes me more worthy than these other disabled people, that the ableists should pull me up while I climb out of the pit of stigma on my cousins’ backs. It’s pretty easy to switch out the “but I’m intelligent!” rhetoric for “I have a mind and personality and my life MATTERS and don’t you dare say it’s because I’m ‘smart’ or ‘articulate’ or ‘insightful’ or able to hold a programming job!” (or whatever individual gets complimented on).

… Or, it would be, if I weren’t afraid that it’s only the creepy intellectual supremacists who value me enough to make sure I have a job.

My usual tactic these days, when someone mentions Rain Man or Temple Grandin or Bill Gates or Sheldon Cooper or any other “autistic” (diagnosed, undiagnosed, or fictional) celebrity, I usually spend some time talking about yes, there are some similarities – like stimming or evading eye contact or sensory sensitivities – and then go on to emphasise that everyone is different. That way I find the people who bring up the examples feel acknowledged, I’m not trying to shut them up, I just elaborate on the concept.

This has been my approach too, with mixed results. Also I’ve stopped validating Sheldon Cooper as an autistic representative, but that’s 100% because I think that show is devoid of humor and completely overhyped, and part of me wonders if it doesn’t just exist as a social experiment to see how much a sitcom can include unnecessary laugh track bites before people start to suspect something. So yeah I shut that one down pretty quickly and offer up Abed from Community in its place. Because people love their fictional representatives of complex issues. Gotta fill the void.

Another big one that comes up a lot is Parenthood, which I’ve watched a few episodes of and found really triggering. And I don’t understand Big Bang Theory at all. Are there really large numbers of people that find it funny?

I’ve heard mixed things about Parenthood but haven’t seen it yet. Kind of afraid that it might be triggering, but I like the actors in it and respect them, so I might try it.

And yes, Big Bang Theory has HUGE mass appeal, and I don’t get it at all. I have actually lost friends (more like failed to make friends with the people I was trying to make friends with) because I couldn’t find the humor in it and politely insisted that “it’s just not for me.”

Even a lot of my “nerdy” friends think it’s hilarious. I think it’s mostly offensive and just simply not funny even at the best of times. Although Mayim Bialik rocks. But that’s because she IS a neuroscientist, not because she plays one on the show.

I can’t see what’s offensive at all. I like the distinct contrast between how the different characters view the world, and how they are bound to find each others’ perspectives ridiculous because it doesn’t fit into their logic (like, when each person talk that person’s logic seems meaningful, but only until switching to another person’s view through the dialogue). Also, as a person with a tendency to feel confused about what’s going on in groups when I’m surrounded by one, I enjoy the opportunity to observe the interplay between perspectives and the caricatures of social faux pas, as an outsider. Even I can see what goes wrong, and for me that’s both fun and educating. It is hard to explain humour, but I think that’s the best explanation of why I find it funny I can give.

I should have clarified that it is offensive to me personally, not offensive on a general level (obviously, otherwise the show wouldn’t have so many fans). Maybe it comes from being laughed at for making the same mistakes that some of the characters do.

The fact that autism (and especially Aspergers) is largely hereditary means many on the spectrum do fall in love, marry and produce children. I too find it frustrating that only the extreme versions become well known. Thanks again for another thought provoking piece.

I can’t but agree. I haven’t fallen from the stars. My parents were autistic even if dad can’t confirm because died thirty years ago, mum won’t agree because we all have our quirks, don’t we. Sis on psychodrugs since 25 years, so no opinion there (now that I think of it, I’ve never asked). Grandma got a phone eventually and used it to communicate… well, she said what she needed to pass on and then put down the receiver. That got even me confused for a moment because I had learned some of the basic things deemed “normal”.
No problem here, I’m only in my fifties so there’s plenty of time ahead that I could use to learn to say “I’m fine, and how are you?” Because I barely manage to say “I’m fine” instead of giving an account of how I feel, then I’m exhausted and forget to say the second part of the sentence.
Or do you think I should have mastered that one by now?
My children have but it’s me that’s got the diagnosis, they’re too young for it. Or am I getting it wrong again?
I think they’ll go for it when the time has come. Until then, I’ll support them in any way I can. And I know that I haven’t done badly so far, although diagnosis came late in my life.

This is such a good post. I get really frustrated at the perception of autism and especially Asperger’s (which we still have here in the Uk *grins*). I used to work with a woman who knew I was autistic and constantly made reference to (expletive deleted) Sheldon or Data (or in fact any unpleasant or rude person she came across) as examples of Asperger’s. I’ve been in situations, even with close family, where it has been questioned whether I am actually autistic because I ‘seem so normal.’

My response is; Sheldon is a fictional character (doh!) and if I seem normal to you maybe you need to redefine what you think autism is.

It seems to me that autistic people are represented in the media as cardboard cut-out characters. Generally male, nerdy, cold, unemotional, robotic. People were shocked that Carly had a whole complex intelligence and personality going on and I think yeah! Of course she does! We all do because we are human beings!

It’s frustrating that people’s perception of autism is so limited. Hopefully that will gradually change as more well-known people come out and as more average people like you and me and the rest of the adults here feel more comfortable with being out to the people around us.

What a lovely article! I am struck, once again by how smoothly and intelligently you write, thank you for the effort!

You re-affirm one of my basic beliefs–you don’t have to be like everyone else to have a meaningful and happy life. While I do like having “superstars” to look up to, it is important to acknowledge them as such, as celebrities. Parents should take a closer look at their own families for role models, as I believe neurodiversity does have familial connections. My Dad sparkles for my son, but I am certain many aunts, uncles, and cousins should have lights shone on them. Acceptance means families can look within their ranks for role models.

Thank you.:-) Yes, remembering that celebrities are in fact famous for a reason is important. I’m so glad you pointed out that family members can be great role models and often share many neurodivergent traits. I hadn’t thought of that but it’s so true.

Even Sheldon Cooper has a girlfriend. lol. Who he actually has recently been showing more interest in being intimate with. I hate the stereotype that autistic means complete loner. I feel like statistically most of us do have relationships. We may have different ones that progress at different rates than other peoples – sometime faster, sometimes slower. I, for example, didn’t date AT ALL until I was 21….I had no interest in dating at all in high school and only recently at almost 31 did I really start thinking seriously about things like marriage and children….this was all by choice. I’m considered fairly attractive and guys were interested in me in high school…I just had no interest in them. I was undiagnosed and didn’t even know “high functioning” autism existed then so I did get a lot of questions about why I didn’t date (the one that bugged me the most was “are you a lesbian?”….um….no….and why would that make a difference with whether I dated or not…lesbians date..they just date girls right?….I really hated illogical questions and often explained this to them lol).

Different developmental trajectories is definitely a thing. And it’s important for people to realize that while different can mean slower than average, it can also mean faster in some cases too. Great point.

I’m puzzled by why people assumed that not dating = lesbian. Maybe they thought you weren’t out and were concealing your dating or partners from them?

thanks so much for this post, couldn’t agree more with your points. when i was diagnosed as being on the spectrum as an adult, i was pointed to stories of other adults on the spectrum…they were all about savants with amazing jobs, lives…at the time, i was working a low-paying graveyard shift and was in serious debt; today i’m unemployed…not a genius or savant…reading those stories only made me feel more depressed, i thought, “great, i finally understand what’s happening to me…and i’m even bad at being autistic”. now i understand that the savant stories are fine, but not the norm…and that we need way, way more personal stories out there, so that people can have a more realistic view of the spectrum. especially since everyone on the spectrum can be so different from one another…like you say, the public generally only hears about the savants or the darker stories and nothing else. but there were stories about males on the spectrum, even if they were not representative of my experiences…it’s very, painfully true that women on the spectrum have been massively under-represented/diagnosed, so those stories need far more attention. thx again for this.

reading those stories only made me feel more depressed, i thought, “great, i finally understand what’s happening to me…and i’m even bad at being autistic”.

I think this is a lot more common than people realize and that’s sad. There is a lot of talk about media representation in the LGBT community and I think the autistic community needs to start having that conversation as well. It’s especially important for autistic kids to be able to see themselves in the media they consume, and not just as the freakishly smart kid or the kid that’s getting bullied on a ‘very special episode’.

I needed to hear this. I’m going for AS screening very soon. I filled out questionnaires for the psychologist two days ago and am just waiting for an appointment. I keep veering between being terrified and excited, and between thinking the result doesn’t matter at all because I’ve already learned so much about myself and labels aren’t important, and thinking that if it’s a negative I must just be a useless freak after all (this is purely negative self-talk and not an attitude I would ever have toward another person, and I know I shouldn’t think about myself like that either and mostly manage not to). Most of what I’ve read makes me think I do have it, but occasionally I read something that doesn’t apply and I think “I’ve been deluding myself, that’s not me”. I tend to have very black and white thinking, things either are or aren’t. This post reminded me that there is no one way to be autistic, or one way to be human. It took the wind out of a major stress day. Thank you.

@ JK – I’m in exactly the same position as you – sent off the questionnaires and now waiting to get an appointment (waiting time approx 12-16 weeks!). And hoping that they say ‘yes Liz, you’re definitely an Aspie’ or otherwise, like you, I’ll just be thinking how crap and totally freaky I must be after all. I scored over the thresholds on the q’s and can identify with lots of points (and I stim so much more than I realised!) but I feel like I need someone else to give me validation otherwise I won’t feel like I can tell anyone or even admit it to myself. I’m just so glad there are blogs like this that show how different and yet so similar we all are. Best of luck with your assessment in due course!

Thanks, and good luck to you too! I don’t know how long it will be until the assessment. I was hoping it will be soon because the letter with the forms said to have it back within 2 weeks or they’d assume I no longer wanted it but my boyfriend thinks it’s just an over stretched service trying to keep on top of the workload. I really hope you get the answers you’re looking for.

I googled the tests after I’d filled them in to see the scores because I couldn’t bear not knowing! It was the AQ and the cambridge behaviour scale. I think I scored well over the cut offs for both, at least according to the internet.
I’m pleased I checked because I don’t have anything extra to worry about, I’m also very pleased I didn’t look them up until after I’d completed them so I don’t have any doubts about how genuine my answers were.
I’m rambling – it’s rather reassuring to meet someone in the same situation. Thank you for that.

I know this feeling exactly. The time from when I made an appointment for my evaluation until I got the results was absolute torture because all I kept thinking was “what if this isn’t the explanation for all these things? what if I’m imagining it?” Hang in there. It sounds like you’ve done a lot of homework and research and self-searching. Most people who do and still feel like AS is a good fit tend to be right about it.

Thank you. I read your book after being referred for assessment and it helped a lot. I started reading the blog after I finished the book. I’m now ploughing through tony attwood’s book on aspergers. It was a psychiatrist who was treating me for ADHD who eventually suspects aspergers after eventually being able to describe difficulties more clearly. It was a shock but the more I find out the more it fits and the less acurate ADHD seems. I’ve told three people,in real life and they all reacted with no surprise at all. My mum apparently already suspected it, my boyfriend is convinced I am, and a friend who has an autistic daughter also thinks it’s likely. In a weird way that adds pressure to the assessment, but it’s also reassuring that I haven’t somehow hoodwinked the psychiatrist.
I’m getting stressed again. Thank you for sharing all this valuable information and message of self acceptance.

Thank you so much for writing this – I needed it. Since “coming out” to a few people about my autism, I’ve faced a lot of pressure to “be successful like other autistic people”. But I’m not other autistic people, I’m me.

My whole life, I was raised with crushing pressure to be super successful and be basically good at everything. I couldn’t just be an average person who lives their life trying to be happy, I had to be “special” and “a cut above the rest”. When I told my Dad about autism, that pressure carried over and took on a different flavor. It was like, because I’m autistic, I now need to extra successful despite my challenges so I can be “even more special”. Kind of like I have to make up for my challenges by being unusually successful. He doesn’t want his daughter to be an autistic person just living a happy life – I have to be a genius who changes the world or something. Otherwise, I’m not worth the accomodations that I need. Since I spent most of my life feeling burdensome, useless, and like I could never be good enough, his comments sting.

People are not a commodity. They’re not worthless unless they can do something. People are people, and we are all valuable just because of that.

Sorry for not commenting or blogging much. Life has been very stressful lately. But I think I’m ready to start slowly coming back.

People seem to forget that autistic people are people like everyone else. *sigh* “Even more special” sounds like ableism and it sucks. I don’t get the necessity of making up for being disabled by being a superstar. I wonder if physically disabled people experience this as well. A lot of inspiration porn revolves around “physically disabled person doing amazing physical feat” which I guess is a similar sort of pressure to “compensate” for a disability.

Uh, sorry, you inspired a tangent.

I’m glad to hear you’ll be around more. I’ve missed reading you. But I completely understand about needing a break due to IRL stuff. I hope that’s getting better for you.

Well, it’s good to know I’m missed 🙂 And it is getting better (slowly), thanks. I ended up having to make a very hard decision, but one that is better for my mental health.

And yeah, it came across as ableism to me too. Basically that in order to “deserve” my accomodations, I have to make up for my challenges by being super successful and important. I’m quite fine being average and insignificant, actually. Being a superstar just seems like a lot of pressure to me.

I hate the whole inspiration porn thing – it’s distructive both to the subject (saying that they’re important because they’re doing this thing), and to the viewer (saying that if the subject can do it, then the viewer should be able to as well). It also diminishes people’s challenges by saying “your challenges are nothing compared to this person’s”. Challenges are just challenges.

I totally understand that. I’ve been making lots of decisions lately based on what’s good for my health rather than what I’d prefer to do and I’m going kicking and screaming all the way.

And yes, the “challenge olympics” benefit no one and no is born to someone else’s inspiration. I don’t get why people think the whole “you should be happy about your life because this person uses a wheelchair” makes any sense.

I love the comments almost as much as the blogs i read…i put it on the love not fear, but had no clue what I was doing so wasnt attached to me…but for all the ppl i haven’t been directly connected to or ive forgot to say it….THANK YOU! For putting your life on display, for answering the same questions 100+x! for everything you do that helps us NT parents, and helps us give our kids a better life, and gives me a whole list of ppl i can point my kids towards later in life to look up to…and to say “hey they’re like me”….every autistic is different but put enough together it adds up. 🙂

I frequently thank God that Asperger’s was not a widely acknowledged syndrome when I was young. Consequently, I was not aware of what I could and could not do. I also thank my parents for being always supportive of me in my successes and in my failures. My dad was probably an Aspie. I just knew he was strange, like me.

Marriage is hard, and I am not good at it. There are four women who will be happy to testify to the difficulty of being married to me. I have five chlldren (two Aspies and three NTs. I love them all, and I would lay down my life for them. I do know this about my children. The world is better for having them in it.

Great post, and great point! (as always:-) I think one problem is the tendency of many autistic people try to talk on behalf of autistic people in general, generalising their own mind version (actually, that’s not just autistic people… that is a general human tendency) … so whatever people read which is written by an autistic person is likely to congeal into a stereotype. Temple Grandin very much does that. She assumes that her version of autism (thinking in pictures et.c) represents autism in general, and that’s what she writes … no wonder if people think Grandin is the archetype of autism. She also has a very clean cut & distinct profile, which makes her memorable and relatable… almost like an epic story. For example, Donna Williams has an in some ways comparable history but a less clean cut, stereotypical profile, and she is not as often mentioned as a representative of autism (in fact I haven’t heard her mentioned the way you describe in your post).

With Einstein, Bill Gates and all all the other famous geniuses … Well there is absolutely no evidence that any of them were in fact autistic. Perhaps they were, but perhaps they were simply geniuses. Many of them are “diagnosed” in popular opinion long after their deaths, I’m not so inclined to take that serious.

I’ve heard a lot of people say that about her writing. I guess I read it so early on in my exploration process that I just took for granted that all autistic people were like her and didn’t question that approach at the time.

I don’t take the armchair diagnoses of famous people seriously either, but lots of people seem to, which can be problematic. Often if people say something often enough, it starts to seem true. I see the Bill Gates as autistic assertion a lot in social media and there’s no evidence that he’s on the spectrum and or that he’s ever said that he. Plus, we now have some actual famous people who are out that we could look to, although quite a few of them are in the entertainment fields, so i guess that’s a pretty narrow selection to choose from.

Yes. I guess that is why we have even heard of them. I don’t think they will replace the usual ones though, the usual ones are used so much because they are popular charismatic figures and therefore have become great folk stories:-)

I was told at a young age that I would hot be able to have a relationship and that I couldn’t have normal emotions. When I was young I didn’t know how to deal with them because I was told that I didn’t have them ….. (how do you deal with something you are not supposed to have?) I turned 18 recently and I got my first girl friend. She doesn’t even care that I’m autistic. I was so glad to find this site, I have read several of your posts and have felt much better know I’m not alone and you have put many thing I couldn’t describe in to words. It Is nice to finally be able to describe some of those things. There is not much of autistic community in my area so any advice would he helpful 🙂

I’m so sorry you were told that kind of ableist stereotypical nonsense as a child. We most definitely have emotions and relationships and are lovable people. I’m glad you’ve found someone who loves you for who you are and you’re finding community online. Validation can be really important.

If you’re still figuring out emotions (I am and I’m in my 40s), it can be helpful to read about alexithymia. Sometimes when we grow up without learning how to deal with emotions as a youngster, we need to make a conscious effort to learn as an adult. Just throwing that out there in case it applies.

as soon as I have noticed typical people tend to sort others by their own stereotyped groups. they have stereotypes about everything and everyone. they probably minimize their efforts, predicting some points by classifying people and labeling them, building their own stereotyped image. so do they with the ones from the spectrum: autisitc = > rain man. they often generalize things (making stereotypes) escaping details (our individual features). sorry, english is not my native language so rpobably some of my comments could be a little bit not easy to understand.

You make some really important points in this post! I do want to add, though, that Temple Grandin’s story can sometimes inspire. I’m an Aspie working with others on the spectrum, and sometimes watching Grandin’s HBO movie is moving and inspiring to Autistic young people. Not so much in terms of her achievements, but the kind of discrimination she encountered in the movie and the ways she dealt with it. We could use more movies about kids on the spectrum in many types of situations that can serve as role models.

Thank you! Yes! Exactly!
The majority of people I know on the spectrum are in relationships. And I’m asexual, and oddly enough every person I know who is asexual are not on the spectrum or show any (genuine, not stereotype) signs of being on the spectrum.
I wonder if these kind of expectations make an impact on many NT people too? In example, every tv character I’ve seen who is asexual is also mentioned as being autistic. For a lot of my asexual friends, this makes them question themselves since a character’s asexuality is always pointed out/emphasized. It makes them wonder if there’s something emotionally wrong with them, the fact that they are asexual but not autistic makes them think ‘I’m not diagnosed with anything, am I just a cold sociopath or something?’ Its crazy how much impact that kind of thing makes. Its crazy that someone has to be labelled as being autistic just to be asexual, and be asexual to be labelled as autistic. Why does it even matter if you’re into relationships or not?

This is fascinating! I’m so glad you took the time to share it. I never thought about how this (reverse of what I described above) sort of stereotyping might be happening to asexual people. It’s terrible that so many people can be made to feel defective or doubt themselves all because of one rampant stereotype.

my big brother (59) has recently been assessed as being on ASD which explains a lot (growing up in the countryside as kids he was thought of as ‘a bit odd’)…I have thought for some years that he was autistic (HUGE Smartie top collections plus other signs) however it was up to him, not me, to follow a wish to be assessed…he has been happily married for 25+ years. And then I looked at my father, my sister and myself…my sis would agree that our dad (deceased) was to some extent, autistic and that she also is in some ways. I’ve done a series of tests online on myself and appear to be half autistic, half neurotypical which explains a lot to me about myself…it’s not that I display autistic traits that’s the problem, it’s the constant wrestling between my autistic parts and my neurotypical parts…does this make sense to you?

Thanks for a great piece. My neurotypical brain struggles to understand the spectrum, and I can easily make the mistake of stereotyping. I’ve made a lot of mistakes in my journey of understanding the spectrum, and perhaps the best way to think of this is that people want to be people, not labels. Sure the label is a start to understanding aspects of what people go through, but it’s not good to make sweeping generalizations based on a term.

Hi! I just read this (going through tags/archives). It’s interesting, because only in the past few weeks have I really come to accept that I probably have Aspergers (or.. ASD since Aspergers isn’t a thing anymore?) even though I’ve felt like I relate to people with autism ever since I read one of Temple Grandin’s books. It must have been “Thinking In Pictures” but that was published in 2006 and I feel like this experience I’m thinking of was before then… so perhaps it was Emergence: Labeled Autistic which was published in 1996. Anyway, whatever I read I recognized that I wasn’t “autistic” I fit in with society way better than she did and I crave intimacy and emotional connections with people. BUT, I also recognized a lot of her behaviors, the way she processed thoughts, her strong interest in animals, and how she self-soothed (stimmed) were things I related to so I seriously started questioning what my deal was. I would tentatively tell people that I kind of related to Temple Grandin and I usually got laughed at. Not in a mean way, but my friends or family just thought that was silly…. I’m “obviously not like that.” Because I’m really good at assimilating I guess. I actually had a friend I told that to and he thought it was the funniest thing ever he would mimic Temple from the movie (which I’ve never seen) where she says, “Hi I’m Temple Grandin!” but he’d insert my name. And I laughed cause he’s hilarious and I get that he means no harm by it, but it also taught me that to be normal I should not associate myself with “people like that.”

Another reason it took me so long to accept that I probably am on the spectrum (I’m 30 btw) was that from age 17 to 22 I saw a certain therapist who I really liked, but it wasn’t therapeutic at all. I literally just went and chatted about things of interest to me, and I was always afraid of divulging too much “of my crazy” because I didn’t want her to not like me or think I was suddenly an “actual weirdo” (I apologize for the ableist language, but I had a lot of internalized shame around mental health at the time) so I don’t know what exactly she thought she was helping me with but we were very casual with each other. I even pet sat/stayed over at her house a few times. But, the thing that I still think about a lot, especially as of late, was that she set me up to “be friends” with a girl with Aspergers…. but her parents paid me. So I was like, a babysitter for a woman around my age but that was secret, I was just supposed to be there as her friend. But like…. A) I’m not that social of a person! B) How awkward! It felt so inauthentic and contrived to me but I am terrible with boundaries so I went along with it because I thought this is what she wanted me to do so I should do it. I think I ended up going over twice before I just kind of… stopped calling and ignored the situation until it went away, which is my signature asshole move lol. So of course in the ten years since then I wasn’t going to consider that I had Aspergers if that girl did (she was cross-eyed, very very sweet but seemed a bit simple, but that could have been me projecting on her from what my therapist/her parents told me, who knows how I’d perceive her now), because I had been chosen to be her secret caretaker. Ahh just writing this out it makes no sense and is so weird and unprofessional!

Soo…. where was I going with this. I guess I am afraid of being stereotyped once I decide to actually tell people in my life I have discovered this is who I am. (I hope to get diagnosed by a professional but I don’t have health insurance yet so… who knows when that will happen) and that they won’t be able to see ME and how all my quirks actually add up to “autistic” vs. trying to keep telling me “no no, you’re normal! you’re just xyz!” Or alternately, saying “oh yeah, you ARE like Temple Grandin” which, no, I would never choose to re-design slaughterhouses to make them less scary for cows, I am more of the mind to try and teach people that the fact cows find things are scary means they have feelings too and perhaps we shouldn’t be mass murdering them… but that’s a whole other conversation. 😉

There is a real danger of being stereotyped or stigmatized once you disclose. People have so many misconceptions about autism. It can help to have a little educational spiel prepared so you can give some quick facts that are relevant to your situation. Or at least some scripts to answer common questions/rude comments. 🙂

The situation you describe with being a “hired companion” seems to be surprisingly common. Judy Endow has written about having similar “friends” when she was younger and how damaging it was to find out the truth. I can totally understand why it made you so uncomfortable and you drifted away from it.

The social expectation of having to be like Temple Grandin was placed on me explicitly by the psychiatrist who diagnosed me with autism. I am not much at all like Temple Grandin. Neither in my type of autism, nor in my ambitions in life or my talents. I don’t want to be her. I want to be me.

My psychiatrist believed that the only way I could be a good autistic person was to overcome my autism and then use everything I had learned to contribute to autism research and other brain research, which is how he saw Temple Grandin. He never saw the price she pays for the life that she is living, and I doubt even she sees that price except in rare moments alone with her thoughts. I don’t want to pay that price. I want to live a life that is mine, doing what I need to be doing, not modeling myself after someone else just because she happens to be both famous and autistic. I wish her the best, but I worry about her because she contorts herself in ways that hurt herself, and may not even be aware of what she’s doing to herself.

I don’t want to pay that price either. She puts so much emphasis on better = “learning to behave” (I assume this means pass), whereas for me better = more useful coping strategies and improved quality of life.

It must be very difficult to always feel like you’re “living in a play” as she’s said that she does.

Yes exactly. She tries so hard to stuff her real self down inside and she does it so hard that it leaks out the edges with the force of an explosion. This makes people uncomfortable to be around her, so she stuffs herself down even more, believing it must be a social skills error that is making people uncomfortable with her. I think if she were able to just be herself, as herself, she would have a much easier time of it socially, but I’m not even sure she knows how anymore. And she’s so stuck in 1950s upper-class manners that… I don’t know, I just don’t know, but I worry about her a lot. She’s done a lot of good for the world, but she does pay a terrible price. I would not want to emulate her.

I very much enjoyed the book /Aspergirls/. There are differences between male and female Aspies, though I think they tend to be in how we present, or how society sees the presentation. A withdrawn woman or girl is just “shy” or “modest” but a withdrawn man or boy is “weird.”

Sheldon Cooper is supposed to be autistic?? Well, I guess it fits. The line gets pretty blurry for me the nerdier a person becomes, because to some degree it is a point of pride in the brainiac community to be very particular and demanding, while “lesser nerds” are more like Leonard or Wallowitz.

I’ve never heard of Temple Grandin. The only time I can recall seeing an autistic person in the media (aside from the guy who shot some people, because that’s a popular thing to do right now) was two characters on the show Alphas. Oh, and Einstein. I know Einstein. I liked his hair. Oh well, since when does the media get anything right? I’m from the South and I’m an artist. Misrepresented autistics is just one more thing for me to roll my eyes at.

Thank you. I had been just thinking this. While I have learned listening to Temple Grandin over this past month, I hear in my head what people say when they are referring to something that belonged to another generation. This is not your grandmothers ravioli. There are some things that she says that I am uncomfortable with, and though she is not all that much older than I am (I’m 53 – she 65 or so) I still don’t identify with her, though she helped me to see myself as somehow being on the spectrum. She is not my rain women. I am grateful for all of the people that you mentioned in your post that are versions of my rain women or man.

Reblogged this on Safe Supports Blog and commented:
This is a very accurate perspective that all people who have autism are not the same and are as varied as every other person. The stereotypical understanding of autism is just that a stereotype. Let’s all address people with an openness based on the individual without prejudice.

Funnily enough, I actually do look up to Temple Grandin in a way, but more for her work with animals than anything else. I suppose it’s more along the lines of envy over her being able to be so close to them, and not necessarily anything she’s done. I really liked her “Animals Make Us Human” book, as an example.

However, I have to say that I do dislike how my parents compare me to her now that they know I’m autistic.

“There’s a huge gap between smart and genius. Smart is getting a perfect grade on a math test. Genius is reinventing the way something is done. I would love to be a genius. Who wouldn’t? But I’m not and, in fact, few autistic people are.”

I know this isn’t the point you’re trying to make, but I have to disagree with this one idea and say that every autistic person is capable of genius, given the right environmental factors. Genius isn’t really an extreme level of intelligence as people often think, but rather the result of the willingness to risk looking stupid by asking the questions of the status quo that nobody else dares to ask. That’s how you reinvent how things are done, and I don’t know of a single autistic person, myself included, who doesn’t naturally have to pick apart every process and procedure we come across, questioning every step of the way, to be able to understand it. The need for specificity is a trait of autistic learning, and it is a necessary trait to have to be able to have those genius moments.

Yeah, I’m not Temple Grandin either. As I see it, being autistic is like being a bird. Being a bird means something quite different for a chicken than it does for a toucan, but they really are both birds and not flying squirrels or bats or butterflies. Regarding the public awareness and understanding of autism, it’s as if everyone first learned about birds (Autism) by studying only parakeets (Temple Grandin), but now little by little the world is elaborating it’s understanding to include first parrots, and maybe toucans, and will eventually come to ostriches and hummingbirds.
Very nice post! 😊

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

Related

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

Related

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.